Living with Vulvodynia

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Apologies for the delay on this blog post. I have been pretty busy at work and I wanted to ensure I got this post as accurate and informative as possible as I have had loads of enquiries regarding my operation. I will apologise now for what will be a particularly long post.

So, to pick up where I left off, I went off to a private hospital to see an expert in the field of VVS and V.

Private clinics = wow! I went to a BMI hospital. There was no waiting, plenty of parking, nice comfy seats, helpful staff and tea and coffee machines! It was absolutely lovely. If I only I had the money to go private all the time I think I would be fair healthier and definitely less stressed. However, my private treatment cost between £160-£190 per visit. Visits that invariably lasted approximately 30minutes. Ouch my purse! :-S

For my first visit I dragged my SO with me (much to his delight of course!) The whole experience was so relaxing compared with my NHS experiences. I started to describe my symptoms and after only a few minutes he stopped me and said “I think I know exactly what you have so there is no need to continue.” He then went on to describe my symptoms perfectly. I was amazed. Less than 5 minutes. No arguing or doubtful looks. This man seemed to have it sorted already. He asked to examine me anyway for quality (?) sake and got me to pop up on yet another examination table. How many people have now seen my vagina? I have lost count. Much to my poor SO’s bewilderment he didn’t ask him to leave and performed the examination with him in the room, something I am now very glad of.

My examination went something like this:

Firstly, he didn’t use a speculum as he knew it would hurt me. Praise be! I could’ve kissed the man! He took an ordinary cotton bud and said to my SO, “If I poke you in the arm with this, does it hurt?” Clearly not. He continued, “Is there anywhere on your skin that I could poke you with this and it would hurt?” Again my SO answered “No.” “Of course not,” said the consultant, “as you don’t have the nerves there to trigger that sort of pain response to such a light touch.” He then took the cotton bud and touched the 6 o’clock spot at the entrance to my vagina very lightly. As you can imagine, I hit the rough and tried not to leap off the table. “And that,” he announced proudly, “Is why your pain is a real physiological problem and not a psychological one.” 10/10. He get’s it. I mean actually get’s it. My SO looked dumbfounded (probably because another man was touching his finances vagina!) and enlightened. He knew it wasn’t in my head but I think that’s the first time he really understood just how simple, yet ridiculous, the problem was.

Once I was down off the couch he explained that I definitely had provoked VVS, which he had just proved, but also understood that these new symptoms were possibly not consistent with that diagnosis alone. He then went on to explain that I could have a more mixed picture with some generalized Vulvodynia or the VVS could be causing a pain response in a more generalised way. His suggestion was to go home and try lidocaine, both when I was in pain and before any vaginal penetration and see how I got on. To cut a long story short, I found that not only did this make sex less painful but it also made the daily discomfort ease off. It was such a simple answer to ease my pain temporarily that I was fuming that I had suffered for years with painful sex and 6 months with general pain and yet no one had tried Lidocaine. Yes it’s not a cure but it would’ve helped me get through the painful days whilst they did all the damn examinations with speculums and actually was a simple way of proving that my pain wasn’t completely in my head.

It was after using the Lidocaine for a while and having success with it that he decided that the Operation was likely to be my best option and that we could hope it would fix all my problems. Now I know what you are going to say. “You were offered the operation before. Why have you gone and spent a fortune on a private consultant just to get the same outcome.” Well, you are right. However you have to remember the place I was in mentally. The NHS had, so far, proved less than helpful and the original person I saw didn’t seem to even take into consideration my other symptoms. Ok so I got the same outcome but at least privately they actually tried something that would prove whether or not the operation was viable. It was just as possible that the Lidocaine wouldn’t have worked and, had I have stayed with the NHS, I would’ve been operated on pointlessly. Not something I really wanted to happen.

The operation was booked on the NHS (to have had it privately would’ve cost thousands. I kid you not) and I started my countdown….

The operation I had was called a Partial Vestibulectomy with modified fentons. Essentially “the innervated fibers are excised. A vaginal extension may be performed, in which vaginal tissue is pulled forward and sewn in place of the removed skin.” – Wikipedia. So if you imagine the entrance to the vagina as a clock face, I had my vestibule tissue removed from the 3 o’clock position to the 9 o’clock position and my vagina entrance slightly shortened and widened at the bottom. Sounds pretty gruesome right? Well it wasn’t great but bare in mind that the NHS consider this a “minor day case.”

I will now explain what my experiences were of the operation.

I had one pre-op appointment a few weeks before the operation where they essentially weighed me, measured my height and took my medical notes. It lasted less than 10minutes and there were no needles or tests or anything of that kind. I received a leaflet but there wasn’t really much useful information on it. Remember this is a minor day case operation.

Before the big day I decided to research for myself what I would need post op and what to expect on the day, using other people’s blogs and facebook groups, as I had received so little guidance. Do a google search for “Vestibulectomy” now and you will see that most of the top results are blogs. I found the following advice:

Rest and lots of it. Make sure you get your bed/settee set up in advance.

Ice, ice, baby. Again, lots of it

Expect to wear pads as you will bleed for a while.

Make sure you have comfy, loose clothes to wear. I.e., a nightie/dressing gown

If you can, have someone to look after you for the first week so you don’t get up and about too much.

Lot’s of painkillers

Dulcoease or a laxative as painkillers can make you constipated and you can easily burst a stitch straining. (I would never have thought of this!)

All this advice proved invaluable as I will explain in my next blog post which will cover my Post-Op recovery.

So the big day came…..I can’t remember if I had to starve myself before my Operation. I imagine so but as I was due to arrive at the hospital at 7am and I was nervous as hell I didn’t eat anyway. I had packed a dressing gown, slippers, book and easy to wear clothes for afterwards. Stupidly I didn’t take my phone as I didn’t trust the hospital or the people in it enough to not steal it whilst I was under. All the advice on what to wear came from family members who’s had operations before. Otherwise I wouldn’t have taken anything! I had had literally no guidance form the NHS.

My SO took me to the hospital and had to leave me at the ward door due to possible contamination and MRSA. I nearly cried when he left. I felt so alone and scared and was wondering whether I’d ever see him again. Stupid I know. They stuck a tag on my wrist and escorted me in. I felt like I was being lead to my doom I was that worked up.

They showed me to a bed, made me take off my clothes and get into a backless gown and some rather fetching paper knickers! Thank goodness I had my slippers and dressing gown. They then left me to it. I sat there trying to read my book, surrounded by about 7 other stressed and nervous women each with their own curtained bed area.

Time ticked slowly by. I was visited by one nurse who confirmed all my details and had me take some painkillers with the smallest amount of water I’d ever seen. I eventually couldn’t manage it so they gave me dissolved painkillers instead. I was again left to my own devices. I hadn’t even brought a watch! I was then visited by the anesthetist who, again, confirmed all my details, medications etc and then left. I now had a face for the man who could possibly kill me! My private consultant also came round to check on us all but these visits seemed small, engulfed by the vast stretches of silence and boredom.

I ended up going to the toilet to see what time it was. Around 9:30! I was sooo bored and lonely and scared. “Why didn’t I bring my bloody phone?” The leaflet had originally said that patients family were to ring at 11 o’clock to organize pick up. A couple of women had been escorted past me with their beds so I knew I was getting close. I wanted to wet myself.

Eventually around 10:30 a lovely male nurse came to see me to announce that it was my turn! Fear nearly caused my heart to stop. He joked with me and put me at ease before escorting me out of the ward, pushing my bed. I was lead into a white, sterilised room where my male anesthetist, male consultant and another man were gowned up and waiting. The nurse pushing my bed also had gowned up. I climbed onto the bed and had 4 men all staring at my vagina and me! Awkward. Whilst the anesthetist got me ready, the other man generally chatted too me and tried to put me at my ease. I don’t know if this was his actual job but he was very good at it. I had my injection, which hurt a bit, and very slowly started to drift of, still being gawped at by all 4 men…..

Then I woke up! Anyone who’s ever had anesthetic will know that strange feeling where you think you can remember everything but actually you have no idea where you are. It’s like waking from a very deep sleep whilst massively hungover. The first thing I noticed was a dull pain in my vagina. Nothing too much but obviously there. I also noticed the eczema on my hands was acting up just to put it into perspective. Another lovely nurse was at hand to help me come round. When I was a bit more compos mentis she eased me into a seated position and asked me if I’d like some food. Yes! God yes! I was so hungry. My appetite doesn’t lessen even 5 minutes after my vagina being butchered it seems.

She disappeared and brought me some water and some toast. Toast has never tasted so good. I wolfed it down. Then, less than 15minutes after waking from my first operation, I was bored and restless. I caught a passing nurse and asked them what I was supposed to do now. Slightly taken aback she said that before I could leave I would have to go to the toilet. “Fine,” I thought, “Anything to keep me busy.” She attempted to help me to my feet slowly and I was like Bambi on ice. I could barely stand at first. Determined though, I stood, wobbled and firmly started off to the toilet.

It was only during my walk that I realised that this was probably not going to be very nice. The nurse fetched me a cup of water and explained that a) I was wearing some padding in my underwear so to be careful and b) that it would probably sting so to use the water to dilute it. Bugger. I went in the toilet and gingerly pulled my underwear down. I was sore and there was a bit of blood but nothing as bad as I expected. I sat down and attempted my first Post Vestibulectomy wee. It took me a while to sum up the courage but eventually I managed it and it barely hurt. Excellent! Pants up, toilet flushed and I announced, “I’m done. Can I leave?” The nurse laughed and said of course I could.

I gingerly got dressed (loose clothes were a blessing) and signed my discharged forms before ringing my SO. When he answered he sounded so nervous I could’ve cried for him. Turns out he had rang at 11, like he was supposed to, and was told that I had just been wheeled down. I was ringing him less than an hour later so naturally he assumed that it was going to be a nurse with bad news. He couldn’t believe I was ready to come home. I could. I’d had enough! I paced about, waiting for my fiancé and eventually got out of there!

I must say that everyone was very lovely and treated me very well but I definitely got the impression that most of the staff didn’t have any idea what I actually suffered from. I asked one nurse, who handed me an after care leaflet (which was useless) how long I should be waiting before I try to have sex, i.e. do I need to wait until I see my consultant at 3 months post op. Her answer? “I would leave it a couple of weeks!” A couple of weeks? My stitches don’t dissolve for 6 weeks. What on earth?! I eventually arrived back home and started making phonecalls to family to let them know I was ok.

Phew that felt like a long post! I had best save my Post-op recovery for another blog post. Hopefully it won’t be as long as this one. In the meantime if you have any questions then fire away 🙂

What sort of person has the time to write a blog? And why would anyone bother to read someone else’s self absorbed ramblings??

I am ashamed to say that this was my opinion of blogs and the people who wrote them. That was before I developed Vulvodynia; a relatively unknown health condition that changed my life overnight in some completely unexpected ways. It is a condition that the NHS and the medical profession in general know very little about.

Blogs turned out to be one of the best ways I could find help, guidance and support whilst trying to understand and come to terms with this condition. Those written by women suffering from this same, relatively unknown condition that were also experiencing the same struggle as me proved to be invaluable. It was at this point that I realised that, not only did blogs give people the ability to share their thoughts and connect with people, they are great for spreading knowledge and giving people faith when before it seemed there was little hope. Yes they can be self absorbed however they often contain some really good bits of useful information and can bring people together in a way that previously wasn’t so easy.

Therefore, I too have decided to write a blog and to jump on the bandwagon. I want to give back to those women who unknowingly aided me in the past. I’m hoping also at the same time to offer support and guidance to other people who may also suffer with vulvodynia and will spend endless hours trawling the internet for just a little bit of advice. People who just want to feel they aren’t alone and that someone else understands what they are going through without the embarrassment of having to talk face to face to someone about a rather private problem. It also gives me a chance to flex my writing skills and I’m already realising just how little I know anymore about writing!!

SO the aim (hopefully) of this blog is to describe what life is like living with Vulvodynia, explain how I ended up where I am today and describe some of the treatments I have so far tried to help ease the constant suffering. Even if just one person reads this blog and thinks “you know that sounds like what I am suffering with. I am going to go to my doctor and tell him/her that I think I have vulvodynia” then this blog will have succeeded.

I have chosen the name Tender Trips as I think it sums up how life often feels – one long, tender trip.

Note – I promise this blog is not going to be one almighty moan from me about hard my life is blah blah blah…… I won’t let my life be ruled by Vuvlodynia and so neither will I let it rule my blog. I hope to talk about other things and include the random musings of the slightly odd person that is me! However be forewarned that there will be moaning. It is what I do best afterall!

Ack! That’s the first one done. Scary…

So what sort of person has the time to write a blog? Well that would be me. And why would anyone want to read one? Well…I’ll leave that up to you.